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If a label of fibromyalgia is pejorative, and it often is, that illustrates a whole other problem. There's the same issue with labelling some people with Long Covid with ME/CFS. Running away from existing labels largely due to the stigma they create doesn't help move the understanding of these...

Karolinska , Sweden This looks like an interesting study; relatively small numbers. This doesn't surprise me, as I think POTS symptoms are something that comes and goes in many people with ME/CFS. And so, whether a person is given the label of POTS can depend a lot on chance, on how the person...

I guess if you want to recruit people for ME/CFS studies, or you want to participate in them, then its important to have a good way of diagnosing the illness. And research is really the only way out of this for us. For an individual who doesn't want to participate in research, I agree, on...

The abstract doesn't read well but the paper seems to be generally sympathetic and relatively informed, at least as far as I have got. I mean they use Fukuda, which isn't great, but they are also talking about possible mitochondrial dysfunction. I think there are some translation issues e.g...

If I was a cynical person, I might think that this is an attempt to add a subjective measure to a condition that is defined objectively. So a BPS intervention which might have little impact on the objective outcomes but, by changing the way a person reports symptoms, might still be able to...

PETITION UPDATE Cochrane refuses to follow its own complaints procedure NOV 19, 2023 — As we have reported, the Science for ME committee submitted a series of complaints under Cochrane's official complaints procedure on 31st October about the Editor-in-Chief Karla Soares-Weiser's mishandling...

Here's the chart of petition numbers. We are inching towards 10,000; momentum has slowed down a bit this last week, although there have been some good numbers from Germany. If you can, please share the link with others and explain why getting that 2019 review removed matters. Here are the...

The site seems to try to dodge commitment and controversy by mostly having a whole lot of people present a whole lot of opinions. Even the list above is just saying that various treatment approaches are used, which is true, but it doesn't make the treatments helpful. I guess it's the...

I'm always keen to see good epidemiological studies of Long Covid/PCS. I haven't read very far, but I am already doubting that this is one. About the same percentage of people had one or more persistent symptoms more than 90 days after SARS-CoV-2 infection as people more than 90 days after a...

Welcome to the forum @TinyBird10. I'm sorry that you are experiencing that; it sounds very frustrating. Most of us are not doctors and none of us can offer you an informed diagnosis - we have a rule that doesn't allow us to provide medical advice, recognising the dangers of us trying to...

It does look good @bobbler I couldn't help reading this in the context of Cochrane I don't feel listened to When you ask for people's input into developing services, it's important to be open and honest, and to build trust. People using our services gave us a clear message when we were...

Yeah, retrospective self-report, with self-selected recruitment. Number of people who had not been infected is relatively small, and so they might be different to the people who were infected - some sociodemographic difference that changes the incidence of menstrual changes. Same problem -...

@Peter Trewhitt writes about the silence and secrecy of the past two years. Actually it mostly continues. A large chunk of the international ME/CFS advocacy machinery is presumably tied up in confidentiality agreements. #MEAction's silence seems to cover the US head organisation and its US...

It's a nice summary of events @dave30th, thank you. Also some great comments on the blog @Peter Trewhitt, @Snow Leopard.

Yes, I think this is a key point to use in advocacy. You can't have an organisation that publishes clinical guidance but does not have the resources to follow its own stated complaint processes, to appropriately deal with feedback that can help identify and remove information that is incorrect...

EMA is European Medicines Authority The agenda looks really interesting and useful; looks like a practical focus on getting good trials done. Pfizer is there talking about the challenges of clinical trials. There's a couple of patient representatives. Hopefully the event will be recorded; the...

Thanks SNT. Sorry about that, I've changed the title thread.

The saga continues - more correspondence with Cochrane: S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

I think there's a lot to like about this study. It's worth clicking through to the fuller explanation, which is still just a summary. One thing is this - the Fred and Joan Davies Bequest. I haven't heard of it, but it is really lovely that people cared enough to donate money in a bequest...

Thanks SNT, it looks useful. There's a reader's survey asking for ideas for stories and resources. I mentioned the Cochrane issue (and the petition), as well as the trend for ME/CFS to be disappeared, replaced with diagnoses of Long Covid and psychosomatic Functional Disorders. And this forum.